Wednesday, September 10, 2008
The Hip Bone's Connected to the...Thigh Bone (isn't it?)
And so I've been having some hip pain for the last few days, which seemed to feel worse as I either twisted while putting weight on my left leg, or tried to roll over in bed.
Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.
I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.
The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.
I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.
Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.
I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.
The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.
I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.
Labels: CT scan, hip, infusion, IV, Lita, stairs, walker, wheelchair, x-rays
Tuesday, August 07, 2007
Waiting with Bated Breath?
Just in case anyone is hyperventilating on the edge of his or her seat waiting to hear the results of my scans: nothing is significantly different. According to the reports, there may be "new areas of uptake" on the upper thoracic spine, and the "dome of the liver" might show a difference, but Lita showed me side-by-side comparisons with the scans from three months ago, and it was really hard to see any difference. There are so many blobs in my liver, the possible increase in size of one hardly makes a difference. Dr. Hayes suggested sitting tight for now, rescanning in a few months, and then making a decision whether to continue with Abraxane.
He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.
Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)
I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.
He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.
Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)
I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.
Labels: Abraxane, Avastin, bone scan, Brian, chemo, CT scan, Dr. Hayes, fissure, infusion, Lita, Neupogen
Friday, June 15, 2007
Sleep: the Dream That Eludes
I had a nasty cold last week (which now Brian seems to be getting). It has progressed to a nagging, unproductive cough, robbing me of sleep and sanity. I sound awful, and not just because of the retainers. It is an effort to squeeze sound out of my throat. I showed up for work yesterday because I had four meetings I really didn't think I could skip; people there keep looking at me funny.
I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.
I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.
I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.
I was coughing at infusion on Tuesday, so the nurses had me talk to a PA. The PA asked me a series of questions about my cough and thought it might be a "reactive airway" thing, and asked if I'd ever had asthma. She set me up with an appointment with my general practitioner for Wednesday evening--I went to the doctor and wrote down as my reason for visit: "horrible, sleep-depriving cough." She gave me a boatload of medications (prednisone, an antibiotic, special cough medicine with a narcotic) and promised I would be able to sleep that night. The codeine made me loopy, I saw weird stuff when I closed my eyes, but I could not stop coughing and my brain would not shut off.
I'm still supposed to go for a chest ex-ray, even though everyone agrees my lungs sound ok. I just can't breathe without hacking. I am wary of trying to drive anywhere, even to get the chest ex-ray. I know that I am impaired.
I can't even think of a clever way to conclude this post. It looks like I will not be traveling to Cleveland this weekend (it would have worked out great...seeing my dad on Father's Day...quel bummer). I am going to try to drag my carcass to Race for the Cure Saturday. Maybe I should call and beg the doctor for either some kind of inhaler or a horse tranquilizer.
Labels: Brian, Cleveland, codeine, Dad, infusion, prednisone, Race for the Cure, sick days
Saturday, April 21, 2007
I should probably also mention...
My CT scan results came back showing improvement. Since there was still some concern about why my liver counts were off, I had to wait until the blood test results were back on Tuesday before going to the infusion area.
It took hours.
It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.
Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.
Anyway, the numbers came down so I went to go be infused as normal.
I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.
It took hours.
It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.
Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.
Anyway, the numbers came down so I went to go be infused as normal.
I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.
Labels: Abraxane, blood tests, braces, chemo, CT scan, Decadron, dermatologist, Dr. Hayes, infusion, Lita, liver
Saturday, February 10, 2007
Breast Cancer Barbie
I saw an ad for Pink Ribbon Barbie for the first time at the University of Michigan Cancer Center at my infusion appointment. I was resuming chemotherapy after a two month break, and decided to read a women's magazine promising me fashion advice and information on how to have the best butt ever. It was an older magazine from October, and had a feature on breast cancer prevention (I'd like to point out to people writing breast cancer awareness month articles that whereas regular self-exams and mammograms are key in early detection, they don't do SQUAT to prevent breast cancer...nobody knows how to prevent it, so call your article something else).
In flipping through the magazine, I turned the page and beheld Barbie's smiling face. Her impossible figure is bedecked in a dazzling gown; her hair is flawless. Sales of Pink Ribbon Barbie promise to help support the Komen Foundation.
That's great, and I certainly don't object to Pink Ribbon merchandise, but Barbie as an embassador for breast cancer is a little bit ridiculous. I sat in my infusion chair, bloated, eyebrowless, expecting that my nasty, scraggly hair would begin again to fall out, and praying that chemo wouldn't give me awful fatigue and nausea.
As an alternative to Mattel's Pink Ribbon Barbie (which was perhaps well-meant but not exactly on the mark), you might consider Breast Cancer Barbie.
"While Pink Ribbon™ Barbie® is dressed up for a charity ball in a gorgeous gown and has her flowing blonde hair up in a bouffant hair-do, Real Breast Cancer Barbie is spending the evening alone with her bald head in the toilet."
Breast Cancer Barbie more accurately reflects the experience of breast cancer. She has lost her hair, gained weight from the steroids given to prevent nausea, and has an IV for her regular infusions. She needs a pill case because the chemotherapy makes it difficult for her to remember if she's taken her medications or not.
Bidding is open now! This item is one-of-a-kind. Proceeds will help send the creator of Breast Cancer Barbie, Linnea Johnston, to the 7th Annual Conference for Young Women Affected by Breast Cancer, which is certainly a worthy cause.
Labels: baldness, chemo, eyebrows, infusion, nausea, pink ribbon
Tuesday, November 07, 2006
Back Behind the Wheel: driving the porcelain bus with stops at Yakville, Puketon, and Barfburg
I have no idea why. I stayed home from work (I called in, using one of my SHORT term sick days--which is actually kind of rare for me) and prayed for sleep to avoid having to deal with the queasiness and excess salivation that precedes an "episode."
Several occasions saw me drooling uncontrollably into the toilet. Nobody ever talks about that particular symptom of nausea. It's never that much of a surprise to throw up because of the whole saliva thing. When I slept I found myself embroiled in very violent RPG videogames of my dreaming brain's device. (It turns out that it's not actually that much fun to be Sydney Bristow, particularly not when everybody is shooting at you.)
Today at infusion they gave me more drugs--this time I got kytril, which is a very good anti-emetic, and zantac for my stomach. They did not make me swallow pills, either, which is probably a good thing.
When I complained about my sinuses, I also got an antibiotic for an infection. I had a cold last week and the sinus agony is living on. I don't have a fever, but I typically don't for sinus infections. Anyway, I feel much better and have a prescription for a couple of days' worth of kytril which I should take whether I feel nauseous or not. If you can stave it off it's better than trying to treat it once the nausea is rearing its ugly head and you are once again behind the porcelain wheel.
Several occasions saw me drooling uncontrollably into the toilet. Nobody ever talks about that particular symptom of nausea. It's never that much of a surprise to throw up because of the whole saliva thing. When I slept I found myself embroiled in very violent RPG videogames of my dreaming brain's device. (It turns out that it's not actually that much fun to be Sydney Bristow, particularly not when everybody is shooting at you.)
Today at infusion they gave me more drugs--this time I got kytril, which is a very good anti-emetic, and zantac for my stomach. They did not make me swallow pills, either, which is probably a good thing.
When I complained about my sinuses, I also got an antibiotic for an infection. I had a cold last week and the sinus agony is living on. I don't have a fever, but I typically don't for sinus infections. Anyway, I feel much better and have a prescription for a couple of days' worth of kytril which I should take whether I feel nauseous or not. If you can stave it off it's better than trying to treat it once the nausea is rearing its ugly head and you are once again behind the porcelain wheel.
Labels: infection, infusion, kytril, nausea, sick days, videogames, zantac
Friday, June 02, 2006
No More Fun with Anaphylaxis
My new chemo drug did not cause me to turn into a red, wheezing beet. I did not have trouble sucking air into my passageways, and the whole thing only took an hour. It was 1/2 hour for the infusion and then 1/2 hour to clear the line and get things in order. The premeds were in pill form, so those took pretty much no time at all.
Of course, I can't be sure that I won't go into anaphylactic shock the next time I receive this drug--maybe I'm building up antibodies and my system will go nuts the next time it encounters this alien substance--but I doubt it. This drug is delivered in a base of albumen, and I have never had a sensitivity to eggs that I know of. The nurses all remembered me from the other day. I also got a visit from Lita, who said, "Here's our problem child!" I was very popular.
I guess for now no more hugging or snorting trees. Oh well.
Of course, I can't be sure that I won't go into anaphylactic shock the next time I receive this drug--maybe I'm building up antibodies and my system will go nuts the next time it encounters this alien substance--but I doubt it. This drug is delivered in a base of albumen, and I have never had a sensitivity to eggs that I know of. The nurses all remembered me from the other day. I also got a visit from Lita, who said, "Here's our problem child!" I was very popular.
I guess for now no more hugging or snorting trees. Oh well.
Labels: Abraxane, chemo, infusion, Lita
Wednesday, May 31, 2006
Snow White and Rose Red
Once upon a time...
I recall encountering the story of Snow White (no relation to the nice lady with the 7 vertically challenged gentlemen) and Rose Red in my Andrew Lang fairy tale book when I was a child. I don't actually recall the plot of the story--I seldom went through it, due to my outrage at having a story with a character named Snow White who had nothing whatsoever to do with poison apples and dwarves. I don't know how the story goes, but I do know that the description of this particular Snow White is familiar: she has skin as white as snow, hair as black as coal, and lips as red as blood. I used to identify with this; my hair is very dark and I tend towards the pale end of the spectrum (fishbelly white). I'm not sure whether Rose Red matches her own name. It can't be easy to be red all the time. Maybe she was sunburned...they didn't really have sunscreen back in those days.
Today I got to be Snow White and Rose Red in the same day. I went for my third chemo treatment, and when they started it, I once again had trouble breathing and my face turned the color of a glowing traffic light indicating that you are moving through the intersection illegally.
It turns out that Taxol uses as its base a substance made from tree bark, and I do know that I am highly allergic to tree pollen (this time of year usually involves lots of nasal congestion and very itchy eyes, to which I say, "man, I'm glad I don't wear contacts"). As soon as I was able to get the nurse's attention, there was a fleet of nurses and the on-call doctor fluttering around taking my vitals, asking if I was ok, listening to my chest, and hooking up saline. They had given me a pre-infusion of benadryl to counterract the effect of the taxol, and ended up giving me even more. One of the nurses was surprised they weren't giving me this other chemo drug which has albumen as its base and fewer side-effects than taxol. "They want to be sure you've tried everything else first," one of the nurses said.
Gotcha. My insurance company did not want to fill my prescription for nexium unless I could say I have tried other antacids first, like tums, tagamet, prilosec otc, etc. Since I am not, strictly speaking, taking nexium as an antacid and rather am taking it to help control my nausea and vomiting, the hospital pretty aggressively negotiated for me.
After they gave me oxygen and I was feeling better, although woozy from all the antihistamines, they let me know that I was approved for this other chemo drug and would need to come back tomorrow to get that instead.
Another appointment is inconvenient, but at least I won't (hopefully) have breathing problems with this new drug.
Who knew a tree allergy could be so problematic?
I recall encountering the story of Snow White (no relation to the nice lady with the 7 vertically challenged gentlemen) and Rose Red in my Andrew Lang fairy tale book when I was a child. I don't actually recall the plot of the story--I seldom went through it, due to my outrage at having a story with a character named Snow White who had nothing whatsoever to do with poison apples and dwarves. I don't know how the story goes, but I do know that the description of this particular Snow White is familiar: she has skin as white as snow, hair as black as coal, and lips as red as blood. I used to identify with this; my hair is very dark and I tend towards the pale end of the spectrum (fishbelly white). I'm not sure whether Rose Red matches her own name. It can't be easy to be red all the time. Maybe she was sunburned...they didn't really have sunscreen back in those days.
Today I got to be Snow White and Rose Red in the same day. I went for my third chemo treatment, and when they started it, I once again had trouble breathing and my face turned the color of a glowing traffic light indicating that you are moving through the intersection illegally.
It turns out that Taxol uses as its base a substance made from tree bark, and I do know that I am highly allergic to tree pollen (this time of year usually involves lots of nasal congestion and very itchy eyes, to which I say, "man, I'm glad I don't wear contacts"). As soon as I was able to get the nurse's attention, there was a fleet of nurses and the on-call doctor fluttering around taking my vitals, asking if I was ok, listening to my chest, and hooking up saline. They had given me a pre-infusion of benadryl to counterract the effect of the taxol, and ended up giving me even more. One of the nurses was surprised they weren't giving me this other chemo drug which has albumen as its base and fewer side-effects than taxol. "They want to be sure you've tried everything else first," one of the nurses said.
Gotcha. My insurance company did not want to fill my prescription for nexium unless I could say I have tried other antacids first, like tums, tagamet, prilosec otc, etc. Since I am not, strictly speaking, taking nexium as an antacid and rather am taking it to help control my nausea and vomiting, the hospital pretty aggressively negotiated for me.
After they gave me oxygen and I was feeling better, although woozy from all the antihistamines, they let me know that I was approved for this other chemo drug and would need to come back tomorrow to get that instead.
Another appointment is inconvenient, but at least I won't (hopefully) have breathing problems with this new drug.
Who knew a tree allergy could be so problematic?
Labels: allergy, chemo, infusion, insurance, nausea, Taxol
Wednesday, May 24, 2006
Cycle trauma
The other day at the appointment with Dr. Rodriguez (who is a physical rehabilitation specialist), it was determined that I am well enough now to not require further visits with her, and that should I desire physical therapy in the future or if anything comes up, I could see her "as needed," but for now I should consider myself as being graduated from physical therapy.
I asked about the CT scans she had ordered of my upper spine, since I had complained of some neck issues which seem to be causing numbness in my thumb when I turn my head to the left. It turns out there are metastatic lesions on that part of my spine as well, which isn't something she can really address.
Brian brought up the subject of whether or not it would be safe to ride a motorcycle, which she denied vehemently. I believe he was asking if RIDING could cause any problems, but she focused on what happens when you fall off or get hit by a car.
Of course nobody thinks that will happen.
Yesterday on the way home from the infusion, Brian asked what I thought about what she had said. There was a yellow bike ahead of us. I said I think that riding itself won't necessarily shake me to pieces and that the doctor is correct in that the consequences of actually having an accident are likely to be worse for me than for other people, but that it might be possible to ride safely. Brian also said he agreed completely with the doctor, that riding a bike isn't as safe as being in a car. It's true; you're totally exposed. But it might be possible to find a relatively safe place to go to ride where bikers are expected and common. We agreed Hines Park would be a good place to ride. At that moment the traffic got a little wonky. Things slowed down and we shifted lanes a little bit only to see that the yellow bike we had seen lay smashed in the middle of an intersection. The rider was lying face down on the pavement.
"Oh my God."
"Holy shit."
Brian pulled to the right and hopped out of the car to see if the rider was ok. I called 9-1-1, only to regret I didn't know exactly what part of 153 we were on. The operator told me they were getting other calls, so I thanked her and hung up. The rider appeared to be breathing, and I think had been advised to lay still in case of a neck or back injury. There wasn't much else we could do. When a police car pulled up to take control of the intersection, Brian got back in the car and we continued down the road. Brian said that the rider's face was smashed up from not wearing a more protective helmet.
Brian went out riding after we got home. I told him to be careful and was relieved when he got home in one piece. He later told me that the smashed yellow bike was still in the intersection but that the car and the rider were gone.
He was still thinking about the accident this morning.
I asked about the CT scans she had ordered of my upper spine, since I had complained of some neck issues which seem to be causing numbness in my thumb when I turn my head to the left. It turns out there are metastatic lesions on that part of my spine as well, which isn't something she can really address.
Brian brought up the subject of whether or not it would be safe to ride a motorcycle, which she denied vehemently. I believe he was asking if RIDING could cause any problems, but she focused on what happens when you fall off or get hit by a car.
Of course nobody thinks that will happen.
Yesterday on the way home from the infusion, Brian asked what I thought about what she had said. There was a yellow bike ahead of us. I said I think that riding itself won't necessarily shake me to pieces and that the doctor is correct in that the consequences of actually having an accident are likely to be worse for me than for other people, but that it might be possible to ride safely. Brian also said he agreed completely with the doctor, that riding a bike isn't as safe as being in a car. It's true; you're totally exposed. But it might be possible to find a relatively safe place to go to ride where bikers are expected and common. We agreed Hines Park would be a good place to ride. At that moment the traffic got a little wonky. Things slowed down and we shifted lanes a little bit only to see that the yellow bike we had seen lay smashed in the middle of an intersection. The rider was lying face down on the pavement.
"Oh my God."
"Holy shit."
Brian pulled to the right and hopped out of the car to see if the rider was ok. I called 9-1-1, only to regret I didn't know exactly what part of 153 we were on. The operator told me they were getting other calls, so I thanked her and hung up. The rider appeared to be breathing, and I think had been advised to lay still in case of a neck or back injury. There wasn't much else we could do. When a police car pulled up to take control of the intersection, Brian got back in the car and we continued down the road. Brian said that the rider's face was smashed up from not wearing a more protective helmet.
Brian went out riding after we got home. I told him to be careful and was relieved when he got home in one piece. He later told me that the smashed yellow bike was still in the intersection but that the car and the rider were gone.
He was still thinking about the accident this morning.
Labels: accident, CT scan, Dr. Rodriguez, infusion, motorcycle, physical therapy
Second Verse, Same as the First (reprise)
I've been here before. I've been to a second dose of chemotherapy. The last time I had a second dose of chemotherapy I didn't suddenly have trouble breathing, have to have the treatment temporarily stopped, be given oxygen, and then have the treatment team paged.
Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.
The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.
My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.
Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).
Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.
The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.
My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.
Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).
Labels: allergy, Avastin, Brian, chemo, Dr. Rodriguez, infusion, mom, nausea, Taxol
Tuesday, May 16, 2006
Well, f#$%.
My day lasted considerably longer than I wanted to and took a radically unexpected turn. I got to the Radiology department at 9:06 a.m. (only six minutes late), and got prepared to have a port installed to make the monthly infusions more bearable. I had anxiety about the port placement. Where would it be? Would it be very painful and awful? What would it be like afterwards? I was assured that the procedure would go smoothly, that people tend to not suffer much discomfort during the placement, and that I could discuss where it would be placed with the person doing the procedure and things would turn out ok.
I actually didn't feel much of the procedure at all. After giving me the sedative, the people in the room kept asking me questions about where I lived, and did I know about Holiday Market, and was I near the new Ikea? I remember that the local anesthetic shots stung quite a bit, and then I don't remember anything else until being wheeled into recovery. This was several hours later than expected, since there were two people who needed emergency procedures before I was even able to go in. So my mom had lunch while I was out of commission, and I had to get dressed and get to my other appointments. There was a wheelchair for me. I got in the wheelchair (which got us special privileges at Wendy's in the hospital) and had my first food of the day: nuggets and a small frosty. I looked at the tiny cup dolefully.
"If I had known the small was going to be that small, I would have opted for a medium."
Then I went to make my next appointment; the infusion that was scheduled at 2. I had totally missed my appointment with Dr. Hayes, but could make this one. As I was getting weighed in, I heard people in the waiting area calling a name I'm hardly used to: "Janet Elkins? Janet ELkins! Janet ELKINS?" I identified myself, and it turns out it was highly important to see the doctor before going in to have the infusion. There was a delay there as the four people at the check in desk neatly failed to help the line of people waiting and depended instead on the trainee being helped to do it. Every conversational remark she made to somebody ahead of me I begrudged. How dare she take time to trade pleasantries when there are people waiting? Grrrr...
Finally I got in to the docor's office and waited. And waited. And waited. My mom called Brian, who then took over the job of waiting with me. And we waited. Finally, Lita came in and had news to report which made it clear why seeing the doctor before going in to the infusion would be important. "While it certainly did at first," she said, "it looks like for whatever reason the hormonal treatment isn't working anymore." We would have to switch to another therapy. So today I started chemotherapy for the second time, which I have already prayed in this blog I would never have to do again, god willing.
God is apparently not very willing.
I finally got home at 10 p.m. Brian is eating ice cream. I'm typing in my blog with a very bruised arm covered with green...antiseptic, I think it is. My face is puffy from something. A side effect of the infusions? I didn't start weeping until after my left eye was already partially swollen shut so I don't know what's going on there.
My day was very long and this was an unpleasant surprise.
I actually didn't feel much of the procedure at all. After giving me the sedative, the people in the room kept asking me questions about where I lived, and did I know about Holiday Market, and was I near the new Ikea? I remember that the local anesthetic shots stung quite a bit, and then I don't remember anything else until being wheeled into recovery. This was several hours later than expected, since there were two people who needed emergency procedures before I was even able to go in. So my mom had lunch while I was out of commission, and I had to get dressed and get to my other appointments. There was a wheelchair for me. I got in the wheelchair (which got us special privileges at Wendy's in the hospital) and had my first food of the day: nuggets and a small frosty. I looked at the tiny cup dolefully.
"If I had known the small was going to be that small, I would have opted for a medium."
Then I went to make my next appointment; the infusion that was scheduled at 2. I had totally missed my appointment with Dr. Hayes, but could make this one. As I was getting weighed in, I heard people in the waiting area calling a name I'm hardly used to: "Janet Elkins? Janet ELkins! Janet ELKINS?" I identified myself, and it turns out it was highly important to see the doctor before going in to have the infusion. There was a delay there as the four people at the check in desk neatly failed to help the line of people waiting and depended instead on the trainee being helped to do it. Every conversational remark she made to somebody ahead of me I begrudged. How dare she take time to trade pleasantries when there are people waiting? Grrrr...
Finally I got in to the docor's office and waited. And waited. And waited. My mom called Brian, who then took over the job of waiting with me. And we waited. Finally, Lita came in and had news to report which made it clear why seeing the doctor before going in to the infusion would be important. "While it certainly did at first," she said, "it looks like for whatever reason the hormonal treatment isn't working anymore." We would have to switch to another therapy. So today I started chemotherapy for the second time, which I have already prayed in this blog I would never have to do again, god willing.
God is apparently not very willing.
I finally got home at 10 p.m. Brian is eating ice cream. I'm typing in my blog with a very bruised arm covered with green...antiseptic, I think it is. My face is puffy from something. A side effect of the infusions? I didn't start weeping until after my left eye was already partially swollen shut so I don't know what's going on there.
My day was very long and this was an unpleasant surprise.
Labels: Brian, chemo, Dr. Hayes, hormone therapy, infusion, Lita, mom, port, surgery
Wednesday, March 22, 2006
Appointments and CT scans and MRIs, Oh My!
This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding
Thursday, February 02, 2006
Phew; where to begin?
So much has happened in the time since my last post. I regret not having been able to chronicle things as they occurred. At this point I think most of the three or so people who read this blog are up to date, but I will try to reconstruct events (to the best of my ability) after the fact.
After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.
I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?
What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.
The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.
Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."
"Is that really necessary?" I said. I'd had it with being stabbed for one day.
It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)
Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.
Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.
Agony.
Every bump in the road compounded it.
Getting out of the car took forever.
Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.
Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.
To be continued...
After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.
I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?
What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.
The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.
Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."
"Is that really necessary?" I said. I'd had it with being stabbed for one day.
It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)
Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.
Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.
Agony.
Every bump in the road compounded it.
Getting out of the car took forever.
Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.
Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.
To be continued...
Labels: blog, Brian, Dr. Hayes, hip, infusion, IV, Lita, nausea, Oakwood, radiation, spasms, University of Michigan Cancer Center, Zometa
